Allison E. 

Allison Lynne was born on November 29, 2005 in Columbus, Ohio.  A healthy little girl, weighing in at 6’3 oz with her twin brother Austin at 5’10oz, the future looked bright.  It was a healthy normal pregnancy.  On Allison’s 1 week birthday, we got a phone call from the pediatrician’s office that said her newborn screening was abnormal.  The few days prior, we did notice that she had been very sleepy and difficult to feed and we had a Dr. visit scheduled for later in the week.  But, when we Dr. asked us to bring her in to get more blood work done as well as a urine sample, I was feeling nervous.

After the tests, they sent us home to await the results.  On Wednesday, we called and told them that she wasn’t eating and they said to bring her into the office immediately, and once they saw her, they sent us to Children’s Hospital—this was Wednesday night.  That night she had many firsts:  including a spinal tap, IV, Oxygen, and was placed into a warmer and spent the night in the PICU.  (Pediatric Intensive Care Unit).  On Thursday December 8th, she was diagnosed with Propionic Acidemia.  She spent her first week in the hospital and came home with a new diet of Propomex 1, Similac, Biotin, and L-carnitine.  Allison did well until her next hospital stay 4 ½ months later in May.  Her acid reflux was the reason for this visit.  After receiving Previcid and Reglan she was back home.   She still was not eating really well and in October she got a feeding tube to assist her in getting all of her nutrients. 

 Later- her white blood count showed up low and after consulting with an immunologist, she was diagnosed with an IGG deficiency.  She received infusions in August, September, and October.  Her blood was checked in December and her IGG levels came up and consequently has not had an infusion since.  Allison’s development has been supplemented with Physical and Occupational Therapy and focusing on her Gross Motor Development.  Allison was saying a few words, clapping her hands, and getting very close to walking, when she developed a virus.  This sent her back to the Emergency Room on Monday January 15th, 2007, with symptoms of vomiting and showing Ketones in her urine.  After a day of testing, including a MRI, Spinal Tap, C-Scan, EEG, and Chest X-ray and another night in the ICU, she was diagnosed with a virus.  They think a virus caused metabolic crisis (due to her Propionic Acidemia), and resulted in swelling of the brain. A neurologist said she had “chorea” which was “secondary to swelling of the basil ganglia.”  Her EEG showed decreased brain activity and her MRI showed the swelling or “lesions” as the neurologist referred to them. She is home now, but not herself (not taking food or bottle, not sitting up, not holding toys, not talking…) They told us it could take weeks or months to tell if damage is permanent, but that the swelling and chorea should go away. For more information on Allison and the Ohio Fundraising Efforts, Click Here.